Post Orgasmic Illness Syndrome (POIS)

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Offline Ambient123

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3700 on: 04/03/2009 22:57:43 »
Well, it seems i was hasty to completely dismiss the idea of SSRI's as a way of at least helping my POIS.

Underwater, you make an interesting point about the Valium, however im not sure what you mean by the fact that it's now toxic to you.

Neverstop, did you feel POIS-alleviating benefits with L-Tyrosine? If so, was there any symptoms in particular that were alleviated? And how long did you take Tyrosine before you noticed its effect?

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Offline underwater

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3701 on: 05/03/2009 00:09:41 »
Ambient---
For 3 months in 2007 and for 2 months in 2008 Valium worked miracles for me.
Unfortunately in both cases, it just stopped being effective (tolerance?). Now I can't even take a small dose, because it makes me very depressed. I never took more than 1 mg. a day. That is nearly a placebo! I was doing a lot of herbal supplements and amino acid experiments the last month. They all failed. Everthing made me depressed. The only natural thing over the last full year that has had a direct, immediate, positive impact on my overall health has been trigger point therapy.
As far as POIS is concerned, I just can't handle arousal/orgasm/ejaculation. For ten years I thought only about Testosterone. The last five about excitatory neurotransmitters. Now, Histamine (another, I suppose, excitatory neurotransmitter?)
At the moment, my only experimentation is on my trapezius and sternocleidomastoid muscles [trigger point] I'm trying to cure lightheadedness and depression. By the way, for MOST of my life POIS has been tolerable though troublesome. I thank my lucky stars that I'm older now etc. etc. My anxiety/panic condition is far worse than POIS. My current active phase has lasted 22 months, with flare ups coming and going on a continuous basis.

 

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Offline neverstop

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3702 on: 05/03/2009 00:58:17 »

Neverstop, did you feel POIS-alleviating benefits with L-Tyrosine? If so, was there any symptoms in particular that were alleviated? And how long did you take Tyrosine before you noticed its effect?

My short post was an attempt to encapsulate in a kind of "laddered" manner, the roads traveled which I felt were POIS related and each area provided it's own unique aspect in my achieving no POIS symptoms at last. (I was the typical 4 days of hell, especially cognitive) YES,,, L-Tyrosine alleviated the final "post-release" symptoms (plummeting mood, mental fog, no/low libido) taking 2x 500mg capsules upon awakening (empty stomach) and 2 more at 1PM starting the day of release. I experienced "normalcy" even as I expected the usual "off the cliff" symptoms and one interesting observation was the lack of libido drop with a sustained mental clarity with another "release test" within the 2 week period I continue to supplement with it. I do not want to give the impression that this one thing was a cure but rather after dealing with a step by step "what works" approach over years, this last piece was tried and there was a real and hopefully lasting benefit. At the least it is a great clue, as the working theory for me would be that those of us with POIS have one thing in common, we experience an over reaction by our bodies/brain after orgasm. I see this sort of like one with an allergy in that the body responds inappropriately to a usually harmless event or substance. The "refractory period" post orgasm is a mechanism whereby no further O's are possible and this is carried out in part by chemicals causing a drop in Dopamine levels. In us, I suspect the drop is long lasting and severe for whatever reason, perhaps in my case a chronic illness that continually depletes my body of the raw materials needed to maintain Dopamine levels. Without the steel, ya can't build a car and without nutrients in sufficient quantity your brain chemistry can't balance out normally.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3703 on: 05/03/2009 02:23:28 »
Counterpoints, my endo was critiquing Michael's post about salivary testing mostly for testosterone, prolactin. Do you agree with that critique? Or do you think saliva tests could work for many hormones?

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3704 on: 05/03/2009 02:47:46 »
Neverstop, welcome to the forum! I've been experimenting with testosterone for 7 years and I'm a convert now (along with Levitra), so your comment about testosterone cream got my attention. Can you elaborate?

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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3705 on: 05/03/2009 02:49:06 »
Counterpoints, my endo was critiquing Michael's post about salivary testing mostly for testosterone, prolactin. Do you agree with that critique? Or do you think saliva tests could work for many hormones?

I'm not sure.  I was just repeating something an endocrinologist said about salviary cortisol tests.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3706 on: 05/03/2009 02:52:31 »
Neverstop, here are some POIS forum resources which may be helpful to you:

Please see "B_Jim"'s POIS Forum Summary of All Cases, here as well as others on the Web:
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009

"Girlwind" has created an excellent POIS Video:
http://www.youtube.com/watch?v=UWBxAUC9k1g

And filling out the POIS survey created by "Counterpoints" will enable you to share POIS information and details with others here. This will also enable us to work more easily with outside researchers by having more organized data available about us:
http://pois.olympe-network.com/

POIS Research Study

We have a copy of the first and only study on POIS by Dr. Marcel Waldinger,MD and Dr. David Schweitzer, MD.

If you want a copy (PDF), send "Pyropeach" a Private Message with your regular email address and he'll send you back the PDF.

To send a Private Message, click on "Messages" at the top of this page. At the Messages page, click on "New Message". From that point on, it works just like posting a message here, except that it only goes to the person(s) you designate.

Remember to put a quote around the recipient's name, e.g., "pyropeach".

New York Times article,

January 20, 2009
Mind
Sex and Depression: In the Brain, if Not the Mind
By RICHARD A. FRIEDMAN, M.D.
http://www.nytimes.com/2009/01/20/health/views/20mind.html?_r=1&scp=1&sq=friedman%20sexual%20January%2020&st=cse


In addition to serving our own informational interests, the above resources can be useful for you to show the medical world - who often shows little understanding of our plight and is sometimes skeptical of our condition - that POIS truly has scientific underpinnings and that POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapy community.

« Last Edit: 05/03/2009 03:06:20 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3707 on: 05/03/2009 02:55:21 »

Counterpoints, my endo was critiquing Michael's post about salivary testing mostly for testosterone, prolactin. Do you agree with that critique? Or do you think saliva tests could work for many hormones?


I'm not sure.  I was just repeating something an endocrinologist said about salviary cortisol tests.


Counterpoints, thanks to you, I insisted on at least an AM cortisol test with my endo, which I took 2 days ago. I have an appointment to discuss those results with him March 10, along with confirming testosterone, prolactin, DHEA-S, which were re-tested along with the new cortisol test. It'll be the first review of bloodwork since being on testosterone patches for 5 weeks now!

One side effect I'm seeing of the testosterone is that little female cats on the street run away when they see me coming. [;D]
« Last Edit: 05/03/2009 03:00:29 by demografx »

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Offline Ambient123

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3708 on: 05/03/2009 02:59:49 »
Neverstop, i have Tyrosine supplements (500mg) in my house. However, when i read the daily intake, it said only take one capsule per day. Did yours also say this?

Also, how quick were your symptoms alleviated?

Did you notice any side effects?

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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3709 on: 05/03/2009 03:02:31 »

Counterpoints, my endo was critiquing Michael's post about salivary testing mostly for testosterone, prolactin. Do you agree with that critique? Or do you think saliva tests could work for many hormones?


I'm not sure.  I was just repeating something an endocrinologist said about salviary cortisol tests.


Counterpoints, thanks to you, I insisted on at least an AM cortisol test with my endo, which I took 2 days ago.

I hope you get some useful information from this test.  Good luck.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3710 on: 05/03/2009 03:16:34 »

I hope you get some useful information from this [cortisol] test.  Good luck.


OK, thanks. I'll post it here at the forum.

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3711 on: 05/03/2009 13:58:26 »
But hasn't the SSRI theory already been dismissed as being largely ineffective?
Not completely. B_Jim, Counterpoints, Martin, Underwater, John21, anyone else: do you agree?
Well, you were insisting that there was no effects on pois so I don't really know. Also since I never took ssri it's hard for me to tell. I believe that it can have an action to decrease sexual frequency thus helping to decrease pois episodes, I think Bola Bola has been helped in this way. It can help for premature ejaculation (perhaps less NE)(the most effective for this is paroxetine but it's also the one which has the most side effects, I know the weaning from it can be difficult). An indication of paroxetine is social phobia and ocd, which can be more present in pois.



Do you think testosterone alone, without Levitra, can cure pois ?

On two recent occasions, I took Levitra several hours afterwards. My guess is that testosterone accounts for 70% to 80% of the healing, for me.
Thanks Demo for your experiment to cut Levitra. 80% cure with testosterone only  is a very good result, but I agree it's very subjective. And you didn't test the day 2 peak of pois by taking Levitra hours afterwards. You're perhaps one of the first persons in the history who takes an ED drug not before sex ! I hope it was useful for something.
« Last Edit: 05/03/2009 14:03:56 by martin88 »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3712 on: 05/03/2009 16:00:12 »

Thanks Demo for your experiment to cut Levitra. 80% cure with testosterone only  is a very good result, but I agree it's very subjective. And you didn't test the day 2 peak of pois by taking Levitra hours afterwards. You're perhaps one of the first persons in the history who takes an ED drug not before sex ! I hope it was useful for something.


Yes, it was backwards, Martin. But I felt it was necessary for MARTIN AND SCIENCE![:D]

Just to clarify, in my earlier post, I meant to say that testosterone-only was 70-80% of the effectiveness. so that would work out to be 70-80% of 80-90%, = about 60-70% healing effectiveness overall for testosterone-only.

I took into consideration the estimated day 2 peak, so it would still be about 60%+ overall for testosterone-only. Again, though, it's a quasi-scientific highly subjective guess (SWAG = scientific wild ass guess [:)]).

I'm sure you understand my hesitance in doing 100% T-only.
« Last Edit: 06/03/2009 06:33:07 by demografx »

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Offline neverstop

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3713 on: 05/03/2009 17:41:35 »
Neverstop, welcome to the forum! I've been experimenting with testosterone for 7 years and I'm a convert now (along with Levitra), so your comment about testosterone cream got my attention. Can you elaborate?

Thanks, before addressing the Testosterone, I'd like to mention that the FIRST thing I ever tried (not necessarily for POIS) which proved itself to have any long term benefit was when I first took 100mg a day of DHEA. This was 14 years ago, and what I noticed was that my POIS symptoms were lessened within 2 weeks of taking it. As this is "the mother of all hormones" it made some sense as it was possibly providing a small testosterone boost. If I had to put a number on it I'd say it had a 35% benefit and I say this because I suspect that POIS may be a multi-faceted problem as opposed to a single magic bullet "cure all" type,(which is rare whatever the malady)  and therefore each success makes a difference, but it's the total affect of all that can lead one towards resolution, or at least a great lessening of the suffering. I do lean heavily toward the idea that this is hormone and or brain neurotransmitter related for those of us afflicted. Though I have had the "flu like symptoms" as well as have noticed the tendency to be immune system challenged post "O", I don't necessarily subscribe to the allergic reaction concept, but rather a deficiency which is highlighted or exaggerated by the usual post "O" physiological mechanism gone awry in our case. (I have tested Cialis and in me anyway it does have a 3 day benefit like your shorter acting Levitra, so I'm on track with your experience with it)

My primary doc is unusual in that he listens to his patients. (whom I see not for POIS but my spinal condition) He gave me some free samples of "Androgel" a testosterone gel (50mg) 1.5 years or so ago, just to see if I might experience some "boost" in a general manner and it was dramatic in a comprehensive way in that ALL ways one can feel better it affected. (well being, sleep, mental physical energy, libido, etc) I would say it was a 60% benefit for the POIS. The gel and cream testosterone preparations are supposed to have less of a spike affect (sharp rise and eventual fall) than the injections but apparently some receive less benefit than others using the skin as a drug delivery reservoir for a 24 hr period. As Androgel is a drug and therefore very expensive (260 a month) I researched the web for some time and discovered that "Compounding Pharmacies" (special type which is legally allowed to make custom preparations) (most town have one) can provide the same thing (with an RX) for much less cost. (50 a month) I have my T levels and PSA checked regularly and it works well for me. I'd like to note here also that I LOWERED my 100 mg Testosterone cream dosage by 25% after proving the L-Tyrosine had a cognitive and libido stimulant benefit and things are pretty smooth now. I also should note that I keep a log to monitor my health and the "O" or "release" days are noted as well. On the day of the start of the L-Tyrosine I had TWO releases in the same day (usually a killer for me as it's a double wammy) and 2 more within the 2 week period without ill affect. I haven't read all the posts here but I'm assuming others have noticed that the longer they go between release (a month is good if one can do that) the less of an affect from POIS, so the opposite is true as well with more releases in a shorter period.

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Offline neverstop

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3714 on: 05/03/2009 17:50:29 »
Neverstop, i have Tyrosine supplements (500mg) in my house. However, when i read the daily intake, it said only take one capsule per day. Did yours also say this?

Also, how quick were your symptoms alleviated?
Did you notice any side effects?

My L-Tyrosine "plus" by Twinlab says 2 capsules a day and lets face it all mfg will err on the cover their butt side of things. I'm taking a total of x4 (or 2000mg or 2 grams) a day without noticeable side affect of any kind. It's pretty common that one can take more than suggested on the label but of course in covering my butt also I can't "suggest" you do so. I am NOT a DR. nor do I play one on TV :-) Symptoms were alleviated the same day but as I've pointed out I am doing more than L-Tyrosine alone. (My Testosterone cream was lowered to 75mg a day and I have taken 200mg of DHEA for the last 14 years which is considered a very "high dosage") My Doc knows I am taking this and blood labs have not indicated my levels are dangerous so what works for one may not for another.
« Last Edit: 06/03/2009 00:53:34 by neverstop »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3715 on: 05/03/2009 20:21:14 »
Neverstop, for what it's worth, Cialis was an absolute disaster for me. I expected a big lift (as did my psychiatrist at the time who gave me a sample to take). Full-blown POIS. For me, it must be something in the 36-hour sustenance that backfires on me, vs. Levitra (I haven't experimented with Viagra).

Some of us have been speculating that the stimulation of nitric oxide in Levitra is what causes the POIS relief.

Thanks much for your testosterone story. T+L (daily 10mg patches + 20mgLevitra) with enough time between O's as you mentioned, heals my POIS 80% to 90%, with Day Zero being the only slightly problematic POIS time. If that gets any lower, maybe I'll try adding your regimen of L-tyrosine and/or DHEA.

After 30+ long agonizing years, a life partially ruined by POIS, I am thrilled. I just hope it sustains.

Glad you're here.
« Last Edit: 05/03/2009 20:31:15 by demografx »

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Offline neverstop

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3716 on: 05/03/2009 20:52:36 »
Demo, and I'm glad you and this group are here to share as there definitely is power to the individual through numbers. Hmmmm, I wonder what is different (aside from duration of action) between Cialis and Levitra? I used a 20mg and did have a headache (which I seldom get) and a flushed feeling but no increased POIS symptoms as you experienced. If I test again maybe make it 10 mg. I guess our response will always be different as with any other drug. The Nitric Oxide increase seems plausible regarding the POIS relief. I have a Levitra and a Viagra sample I could test with, but no need at this point.

I would think the "T" patches would be similar in affect to the gels and creams. I am taking a pretty big dose of T and my measured levels reflect it but the Doc and I think it's worth the "risk". (seems to be none so far)

I am 51 and have been suffering for 25+ years so I know what you mean. It feels good to feel good, and I'm not likely to backtrack anything lest I lose it.
« Last Edit: 06/03/2009 00:41:24 by neverstop »

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Offline Ambient123

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3717 on: 05/03/2009 23:03:22 »
Thanks for the advice Neverstop. I may just try higher Tyrosine doses. At one capsule (500mg) per day, I noticed very little difference in my POIS symptoms. I was afraid to take more, because i had read of several side effects. Sometimes i think its just best to live in ignorance. :)

Where did you acquire your DHEA from?

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Offline neverstop

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3718 on: 05/03/2009 23:30:37 »
Ambient123,,,  I wouldn't be too worried about slightly higher doses of L-Tyrosine. It sure seems it would be worth a try on a test basis at least. If I considered every possible purported side affect on all the things I utilize (mostly non drug)(Drugs side affects are pretty scary to ME) daily with great benefit for so many things, I doubt I'd be alive or well enough to be writing at this moment. 1 step at a time, observe, conclude, and move on from there. When I select something I think might help, I think it's best (for me) to go with a good brand and reasonable quantity just to see what if anything occurs. If nothing, maybe you need to try a little longer.

DHEA (in the US) can be purchased at any Vitamin store, (No RX need) however I get mine online from Vitamin Research Products. Vitacost may also have it at a better price than VRP. It's a decent way to go short of going the whole testosterone route which may help you decide if you should go that way should you notice anything beneficial. Give it a good 2 weeks before the first test.

I'd be interested in your results.
« Last Edit: 06/03/2009 00:43:12 by neverstop »

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Offline hurray

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3719 on: 05/03/2009 23:57:34 »
Neverstop, welcome to the forum! I've been experimenting with testosterone for 7 years and I'm a convert now (along with Levitra), so your comment about testosterone cream got my attention. Can you elaborate?

Thanks, before addressing the Testosterone, I'd like to mention that the FIRST thing I ever tried (not necessarily for POIS) which proved itself to have any long term benefit was when I first took 100mg a day of DHEA.

Very interesting. It occurred to me that when I first tried out Fenugreek (to alleviate POIS symptoms), I had previously been taking DHEA for unrelated reasons - in fact they may even have overlapped. Could it be that the initial (almost total) success of Fenugreek for me was due to me combining DHEA and Fenugreek?

I intend to give this combination a try at some point in the next week or so.

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3720 on: 06/03/2009 03:44:26 »
I'm day 2 today (25 hours later) .Dispite my post-orgasm supplements (vitamin C + B, bromelain), I have flu-like symptoms (sweats, feverish...). Sunday I ate a lot of high carbs (Family Banquet) : ice cream, pastas, pizzas, cakes, satured fats... I don't say my vitamins and enzyme is useless but the high carbs have a strong and quick negative effect to compare to supplements. I had clear muscle tremors yesterday. My urinary pH is too acid (5 to 6).
Few weeks ago I was ill and I couldn't eat a lot for several days. After this I noticed my social phobia was reduced significantly.
If you don't eat enough food you'll have a lack of vitamins (maybe this is true) but here they say food deprivation can lower catabolic hormones:
- http://cat.inist.fr/?aModele=afficheN&cpsidt=19450718

- same study with more details

Cortisol is a catabolic hormone:
http://en.wikipedia.org/wiki/Catabolism
I'm just wondering if reducing by 25% our food intake could be of any help. Hope I'm not becoming anorexic !
« Last Edit: 06/03/2009 03:56:52 by martin88 »

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Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3721 on: 06/03/2009 03:47:59 »
just wondering i tried dhea, i didnt really notice much but what i noticed was a testicular shrinkage did anybody experience that.


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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3723 on: 06/03/2009 05:36:26 »
Welcome, Christopher!

Thanks for the article links from Reuniting. Marnia visits here from time to time.


I love this cartoon on one of your links. Is this The Future Of POIS Therapy? [;D]
« Last Edit: 06/03/2009 06:13:48 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3724 on: 06/03/2009 05:59:28 »
Christopher, please tell us something about yourself!

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3725 on: 06/03/2009 06:26:09 »

I wonder what is different (aside from duration of action) between Cialis and Levitra? I used a 20mg and did have a headache (which I seldom get) and a flushed feeling but no increased POIS symptoms as you experienced.


To clarify, Cialis did not increase my POIS symptoms. It just didn't work at all. So the letdown felt devastating, emotionally. Failed experiment.

Also, at the time I didn't realize the importance of testosterone, which I was taking erratically via depotestosterone injection, which as you know "spikes". so I might have simply been on the other side of "spike".

Last year I mistakenly attributed all my POIS success (and failure) to Levitra. And then I stopped testosterone altogether, not realizing it was a major contributor to my POIS healing!

Amazing how something so simple became so complicated! Similar to Hurray's experimentation with Fenugreek and DHEA.
« Last Edit: 06/03/2009 06:38:17 by demografx »

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3726 on: 06/03/2009 13:05:01 »
Phosphatidylserine

Scientific study :

Quote
Effects of phosphatidylserine on the neuroendocrine response to physical stress in humans
The data indicate that physical stress induced a clear-cut increase in plasma epinephrine, norepinephrine, ACTH, cotisol, GH and prolactin, whereas no significant change was observed in plasma dopamine and glucose. Pretreatment with brain cortex-derived phosphatidylserine significantly blunted the ACTH and cortisol responses to physical stress.

Naturopaths/nutritionists think :
- Phosphatidylserine can modulate release of cortisol and ACTH
- Phosphatidylserine blocks the excessive response of  adrenals to a stress
- "repair" HPA axis
- The treatment must be prolonged at least 3 months (?)
Thanks a lot B_Jim for posting this. I'm wondering if it makes a difference to take brain cortex-derived PS as it's mentionned in the study.

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Offline Ambient123

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3727 on: 06/03/2009 13:30:06 »
Neverstop, apologies for bombarding you with questions. I have one more

On a scale of 1 to 10 (1 = No difference, 10 = Great effect), how much of a difference did the Tyrosine make to your POIS symptoms?

(P.S, im aware of the fact that Tyrosine is only one of many treatments you are taking. I am asking for its effect as a singular treatment)

Thanks 

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Offline neverstop

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3728 on: 06/03/2009 17:48:22 »
Ambient123,  That's all right,,  (though I will disclose now, typing is a bit difficult for me with some paralysis from the spinal cord injury so I may be inactive here at times) I'd have to say that it would be impossible to give you an L-Tyrosine only rating (Singular) as I've been working on this (or more accurately my even bigger symptoms from SCI) for years with incremental successes that I keep up with. So, when I tried the L-Tyrosine this wasn't done with the same severity of POIS symptoms I once had. The only way I could really give one singularly would be to stop the various things (the "T" DHEA. assorted neurotransmitter precursor supplements, as my "primaries" to mention) I utilize. I'll give you an answer though,  this way,,,,,,, of the remaining post "O" symptoms of decreased mental clarity, depression, and some physical energy depletion, it would be an 8 I would say. (we can always wish for more right) It was as though I "hit the mark" with this one thing which was very satisfying indeed.

Hope this helps some,

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Offline neverstop

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3729 on: 06/03/2009 17:51:30 »

I wonder what is different (aside from duration of action) between Cialis and Levitra? I used a 20mg and did have a headache (which I seldom get) and a flushed feeling but no increased POIS symptoms as you experienced.


To clarify, Cialis did not increase my POIS symptoms. It just didn't work at all. So the letdown felt devastating, emotionally. Failed experiment.

Also, at the time I didn't realize the importance of testosterone, which I was taking erratically via depotestosterone injection, which as you know "spikes". so I might have simply been on the other side of "spike".

Last year I mistakenly attributed all my POIS success (and failure) to Levitra. And then I stopped testosterone altogether, not realizing it was a major contributor to my POIS healing!

Amazing how something so simple became so complicated! Similar to Hurray's experimentation with Fenugreek and DHEA.

Demo, Thanks for the clarification, I get you now. Yes, multiple solutions in combination for multiple symptoms can be difficult to sort out once you are a ways along.

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Offline longwalkhome

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3730 on: 06/03/2009 23:30:09 »
I'm not sure if this has been brought up already, but there seems to be a very small group of women who react allergically to semen. But the question is: Can the male body regard something that is produced by itself as hostile or unknown, thus leading to some sort of anaphylactic shock? Or to put it short - can a man be allergic to his own sperm? Unfortunately I don't know anything about this sort of thing, so I'm sorry if this sounds childish to some of the more well-read members on this board ...

http://www.essortment.com/articles/semen_allergy_100017.htm
Quote
What kinds of allergic reactions can people have to semen?
People can have localized problems after immediate contact with semen. They can have burning, pain and swelling that can occur for long periods of time. Typically it affects the outer vaginal vault area, though it can also affect the inner vault. Some women describe severe burning and pain, where it feels like 1,000 needles have been injected in them at one time.

Quote
What in semen are people allergic to?
People are allergic to proteins in semen. We don't really know which proteins are responsible at this point. Many of the proteins associated with the semen allergy are believed to be common proteins found in all semen, but it's also possible for people to be allergic to a protein that is unique to an individual.

The systemic reaction is believed to be linked to a specific IgE antibody that is triggered by the protein; this antibody response is similar to what occurs in people who have seasonal allergies. There are probably multiple causes of the localized reaction. A delayed type of hypersensitivity response similar to what occurs with poison ivy may be involved.

From http://www.ncbi.nlm.nih.gov/pubmed/81816?dopt=Abstract:
Quote
A case of an anaphylactic type of allergy is reported with pruritus, mucosal edema, asthma and shock symptoms which developed in a 26 year old female against her husbands sperma fluid. Symptoms and test results are compared with those of six other published cases. Results of skin tests obtained with a fraction of sperma plasma separated by chromatography are indicating that the antigen is of protein nature with a molecular weight of about 14.100. A molecular weight between 12.400 and 24.00 has also been reported in the literature.

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Offline longwalkhome

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3731 on: 06/03/2009 23:35:34 »
I'm sorry, I just found out that there's already been a post about this ... But maybe it makes at least a little sense to bring it back up again anyhow.

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Offline Ambient123

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3732 on: 07/03/2009 00:38:45 »
Hey guys.

This is a random question, but does anyone know what happens to Thyroxine (For the thyroid gland) levels after an "O"?

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Offline Defsync

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3733 on: 07/03/2009 00:39:10 »
OH MY FREAKIN LORD

let me tell you all i've been looking for information on this MY WHOLE LIFE.

I FINALLY FOUND A THREAD ADDRESSING THIS.

what the op describes in his first post i've experienced my whole life as well.

okay so $20,000 of brain MRI and EKG found nothing. I havent gone as far as an endo makeup, though I should in the near future. I haven't read this entire thread yet, i'm going to right now.

THIS SYNDROME IS NO JOKE FOR PEOPLE WHO HAVE IT.

I cannot function at WORK for a few days after a climax of any kind. Try telling your boss that's why you are screwing up the last couple days. Also try telling your wife or girlfriend that no, you really dont like sex cause it !@#$!#@ your head up in an utterly frightening way. You want to know what it's like? Here, let me shoot you up with some nice tranquilizer that lasts for days and see how much fun you have.

what gets hit?

memory recall
concentration and focus
vocal communication

I have been abstinent most of my life because of it. Do I really mind being totally abstinent? Not at this point, I'm use to it. But it would be great to please a girlfriend al naturale without having to suffer like this.

Man I cant wait to read this entire thread. Im saving it and I'm shoving it in my doctor and neurologists face.

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Offline underwater

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3734 on: 07/03/2009 01:21:12 »
Nice to see new members with great contributions and positive therapies.
I wish my symptoms were similar to the vast majority of POIS sufferers.
Mine is like a slow panic attack with tingles, sweats, depression and a general amped up feeling. I keep this anxious, tense condition for about 4 days. I don't get this severe exhaustion and cognitive impairment. Yet like everyone else, I don't like to socialize at all during this period. During my POIS, I have to avoid arousal or I get worse. There is a bit of madness to mine. As a consequence of my symptoms, I am still pursuing the auto-allergic side of things. Another term for me might be a hyperstimulatory response to orgasm and arousal. Something (some chemical/s) stay in my system and don't let me relax!!!!! Mine is almost opposite of everyone's main symptoms.

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Offline Ambient123

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3735 on: 07/03/2009 01:35:42 »
I have been looking into what happens to thyroxin levels after orgasm, but have still found nothing.

Does anybody know what happens to Thyroxin levels after an orgasm?

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3736 on: 07/03/2009 02:00:23 »

I'm not sure if this has been brought up already, but there seems to be a very small group of women who react allergically to semen. But the question is: Can the male body regard something that is produced by itself as hostile or unknown, thus leading to some sort of anaphylactic shock? Or to put it short - can a man be allergic to his own sperm?


Longwalkhome this sounds reasonable. Thanks for the links. Maybe testosterone - by way of helping (pushing?) sperm regeneration - prevents this allergic-type reaction?

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3737 on: 07/03/2009 02:13:20 »

I FINALLY FOUND A THREAD ADDRESSING [POIS].


Defsync, welcome to the POIS thread of The Naked Science Forum!

Thank you for sharing your experiences. Most of us were incredibly/pleasantly surprised as well to find this forum after years alone in "the wilderness", where most people just don't have a clue: friends, family and medical "professionals" alike.

We look forward to more of your posts.

Here are some POIS forum resources which may be helpful to you:

Please see "B_Jim"'s POIS Forum Summary of All Cases, here as well as others on the Web:
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009

"Girlwind" has created an excellent POIS Video:
http://www.youtube.com/watch?v=UWBxAUC9k1g

And filling out the POIS survey created by "Counterpoints" will enable you to share POIS information and details with others here. This will also enable us to work more easily with outside researchers by having more organized data available about us:
http://pois.olympe-network.com/

POIS Research Study

We have a copy of the first and only study on POIS by Dr. Marcel Waldinger,MD and Dr. David Schweitzer, MD.

If you want a copy (PDF), send "Pyropeach" a Private Message with your regular email address and he'll send you back the PDF.

To send a Private Message, click on "Messages" at the top of this page. At the Messages page, click on "New Message". From that point on, it works just like posting a message here, except that it only goes to the person(s) you designate.

Remember to put a quote around the recipient's name, e.g., "pyropeach".

New York Times article,

January 20, 2009
Mind
Sex and Depression: In the Brain, if Not the Mind
By RICHARD A. FRIEDMAN, M.D.
http://www.nytimes.com/2009/01/20/health/views/20mind.html?_r=1&scp=1&sq=friedman%20sexual%20January%2020&st=cse


In addition to serving our own informational interests, the above can be useful for you to show the medical world - who often shows little understanding and is sometimes skeptical of our condition - that POIS has scientific underpinnings and that POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapist community.

Also, it can be helpful when dealing with medical professionals to point out the successful existence of this forum for over 2 years, which has attracted over 100 POIS sufferers worldwide who have posted here, plus nearly 250,000 page visits. Not bad for a rare malady!

Again, Defsync, welcome!
« Last Edit: 07/03/2009 02:37:53 by demografx »

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Offline Defsync

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3738 on: 07/03/2009 07:15:00 »
Thanks. I havent really shared yet =) I am still gathering my thoughts on my experiences with POIS and things i've tried. It will be a day or two till I post more on that.

But in the meantime, what I think the result of all this collective research is a "portfolio" of everything that's been learned, that we can submit to research clinics and medical universities around the country, on hopes that some clinic or some aspiring student would find interest in a study to learn more about POIS.

one place i would send such a "portfolio"
http://my.clevelandclinic.org/endocrinology/research/default.aspx

in my city we have one of the top medical universities in the nation. i would also send it there. Also, why is all this information in a forum thread? Why doesn't POIS have its own website already? A place where we have all the information gathered and digital copies saved to the server, with links to where it all came from, with each person's experiences listed, something a bit more organized so if we are trying to get medical professionals to do research at the very least we can point them to the website.

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Offline John21

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3739 on: 07/03/2009 13:25:04 »
Another NE (wow, what a string!)

This time I am affected, garlic is not saving me (but perhaps helping). I would give it a 4.5 on a scale 1-10.

Quote
I wish my symptoms were similar to the vast majority of POIS sufferers.
Mine is like a slow panic attack with tingles, sweats, depression and a general amped up feeling. I keep this anxious, tense condition for about 4 days. I don't get this severe exhaustion and cognitive impairment. Yet like everyone else, I don't like to socialize at all during this period. During my POIS, I have to avoid arousal or I get worse. There is a bit of madness to mine. As a consequence of my symptoms, I am still pursuing the auto-allergic side of things. Another term for me might be a hyperstimulatory response to orgasm and arousal. Something (some chemical/s) stay in my system and don't let me relax!!!!! Mine is almost opposite of everyone's main symptoms.


Underwater,
I can identify with this, but without sweats or depression. Being somewhat "in it" presently I will try to explain what I am experiencing.

I also feel mentally excited, like my mind is swimming in something stimulating, slowing my thought and making me spaced out. I am less available for communication because of this mental overload. With my social ability degraded I become hyperfocused on trying to act normal. The situation makes me want to hide under a rock to avoid embarrassment, as stress can only make the problem worse. With time the only "way out" I feel helpless and dejected. Solitude is welcomed.

Edit: After the last couple of NEs I have had lots of muscle twitching, this time in my nose area.
« Last Edit: 07/03/2009 13:32:39 by John21 »

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Offline Finally

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3740 on: 07/03/2009 18:33:18 »
I am not sure if I had posted these before?  It mentions how blood vessels become inflamed and constricted. Possibly why Levitra or natural equivalents may help?

http://www.actionlove.com/extra/headache.htm

also  dealing with Semen loss:

http.//wwwactionlove.com/extra/backpain.htm


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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3741 on: 07/03/2009 21:04:25 »

[My POIS] is almost opposite of everyone's main symptoms.


Underwater, I think there are significant symptomatic differences amongst us all. What binds us together is that we all experience severe problems after orgasm, lasting for days and sometimes weeks. Hope I'm not being too simplistic.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3742 on: 07/03/2009 21:50:43 »

I think the result of all this collective research is a "portfolio" of everything that's been learned, that we can submit to research clinics and medical universities around the country, on hopes that some clinic or some aspiring student would find interest in a study to learn more about POIS.

one place i would send such a "portfolio"
http://my.clevelandclinic.org/endocrinology/research/default.aspx

in my city we have one of the top medical universities in the nation. i would also send it there.


Defsync, per your suggestions above, can you assist us by sending a "porfolio" of this forum to your university/endocrinology contacts?


Why is all this information in a forum thread? Why doesn't POIS have its own website already? A place where we have all the information gathered and digital copies saved to the server, with links to where it all came from, with each person's experiences listed, something a bit more organized so if we are trying to get medical professionals to do research at the very least we can point them to the website.


Excellent questions you raised. It's just a question of resources. The Naked Scientists website provides us with a terrific infrastructure, staffed by technically web-savvy staff and a prestigious environment of Cambridge (UK) scholars and scientists. Our own resources started with John21 bravely talking to himself about POIS on his (and the thread's) very first post [:)]. Then B_Jim created a summary of visitors here as well as other cases of POIS on the web. A video was created. Counterpoints and Martin put together an interactive questionnaire database. Counterpoints has also been actively involved in getting well-known researchers to possibly study us. And I have attempted to get exposure and/or assistance from a variety of sources, including Dr Marcel Waldinger (the first POIS-investigator) and grant funding from a major university medical center as well as assistance from a friend, a Harvard biophysicist who pioneered research into HIV/AIDS treatment. It can be a fulltime job sometimes.

Considering our limitations, I think it's amazing how far we've come. I have put in a very significant amount of time but I am not technically proficient enough nor have enough time to create and maintain/manage an independent site.

Hopefully, Defsync, you can assist us in taking this thread to the next level.
« Last Edit: 07/03/2009 23:22:01 by demografx »

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Offline underwater

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3743 on: 07/03/2009 22:02:51 »
John------
Yes, stress clearly makes my POIS symptoms worse. I also sense a correlation between the extent and degree of arousal before orgasm and the intensity of POIS. There have been a few posters who have commented on arousal. I feel my condition has a psychogenic component that interplays with my chemistry. After arousal/orgasm, it's like trying to prevent single notes on the piano from becoming chords, I just can't stop it; the POIS dirge plays again. The other day, arousal and small semen loss and ouch!, mini POIS. My problem seems neurochemical, neuromuscular and psychological.
Right now I'm looking for a long term, natural anxiety/anti-inflammatory reducer. Presently I am experimenting with Quercetin. I have had bad allergic reactions to all my herbal and amino acid supplements. It's very distressing.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3744 on: 07/03/2009 22:25:31 »

Thanks. I havent really shared yet =)


Defsync, when I said thanks for sharing your experiences, this is what I was referring to (below). In my opinion, you communicated (shared) quite a bit of good emotion that we could all relate to:


-i've been looking for information on this MY WHOLE LIFE.

-what the op describes in his first post i've experienced my whole life as well.

-okay so $20,000 of brain MRI and EKG found nothing.

-I havent gone as far as an endo makeup, though I should in the near future.

-I cannot function at WORK for a few days after a climax of any kind.

-try telling your wife or girlfriend that no, you really dont like sex cause it !@#$!#@ your head up in an utterly frightening way.

-You want to know what it's like? Here, let me shoot you up with some nice tranquilizer that lasts for days and see how much fun you have.

-what gets hit?

memory recall
concentration and focus
vocal communication

-I have been abstinent most of my life because of it.

-it would be great to please a girlfriend al naturale without having to suffer like this.

-Man I cant wait to read this entire thread. Im saving it and I'm shoving it in my doctor and neurologists face.

« Last Edit: 07/03/2009 23:04:18 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3745 on: 07/03/2009 22:54:54 »

I am experimenting with Quercetin. I have had bad allergic reactions to all my herbal and amino acid supplements. It's very distressing.


Underwater, best wishes with Quercetin. Maybe B_Jim will add this to our database.

Also, very sorry to hear about your herbal and amino acid supplements' disappointment.
« Last Edit: 07/03/2009 23:06:09 by demografx »

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Offline Defsync

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3746 on: 08/03/2009 00:48:19 »
I've created an account on wikipedia and am working on getting it "autoconfirmed" so I can edit locked pages like "orgasm" to include reference to POIS.

I've also created a wikipedia entry for POIS here:

http://en.wikipedia.org/wiki/Post_Orgasmic_Illness_Syndrome

I copied almost verbatim the script from the Youtube video to start off with. It would be a great help for everyone who has done work on this to help contribute and really flush out the page with as much information and references as we can, such as creating ref links to ALL the articles that any of you may think are related to POIS or could have any information helpful to the cause. Better than a portfolio, a link to a complete wikipedia entry could be emailed around the globe with ease. I have a backup maintained at home of the page, and will make continual backups as people edit it.
« Last Edit: 08/03/2009 00:57:20 by Defsync »

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Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3747 on: 08/03/2009 01:37:33 »
I've created an account on wikipedia and am working on getting it "autoconfirmed" so I can edit locked pages like "orgasm" to include reference to POIS.

I've also created a wikipedia entry for POIS here:

http://en.wikipedia.org/wiki/Post_Orgasmic_Illness_Syndrome

I copied almost verbatim the script from the Youtube video to start off with. It would be a great help for everyone who has done work on this to help contribute and really flush out the page with as much information and references as we can, such as creating ref links to ALL the articles that any of you may think are related to POIS or could have any information helpful to the cause. Better than a portfolio, a link to a complete wikipedia entry could be emailed around the globe with ease. I have a backup maintained at home of the page, and will make continual backups as people edit it.

Good Job on that.

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Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3748 on: 08/03/2009 01:43:39 »
I've created an account on wikipedia and am working on getting it "autoconfirmed" so I can edit locked pages like "orgasm" to include reference to POIS.

I've also created a wikipedia entry for POIS here:

http://en.wikipedia.org/wiki/Post_Orgasmic_Illness_Syndrome

I copied almost verbatim the script from the Youtube video to start off with. It would be a great help for everyone who has done work on this to help contribute and really flush out the page with as much information and references as we can, such as creating ref links to ALL the articles that any of you may think are related to POIS or could have any information helpful to the cause. Better than a portfolio, a link to a complete wikipedia entry could be emailed around the globe with ease. I have a backup maintained at home of the page, and will make continual backups as people edit it.
you should put the forum web site as reference.

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Offline aaronchi

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #3749 on: 08/03/2009 04:19:31 »
Hey guys,

I'm glad I found you. 32 years old. Been suffering with something like this for a couple of years now. I initially thought that this was triggered by a urinary tract infection that got up into my kidneys because I always have some pain/inflammation in my lower back during these episodes and it's most similar to what I felt when I had that infection.  however, I've been to doctors and kidney function is normal.

The only thing that works for me is sex without ejaculation. This is still troublesome because sometimes after sex, I'll be so aroused that I'll have a wet dream and ruin it.

Anyway, even though I've found this forum and it feels better to know that there are other people out there who are experiencing this, it seems kind of ridiculous to be posting at the end of a single forum thread with 10,000 posts.

I'm a web designer/programmer by trade and have built large scale community oriented sites. Is anyone interested in helping me to organize the information that's been presented so we can create a site? Maybe we can get something like POIS.org. It would be much better to have a threaded forum where people can interact on multiple topic threads/froums (ie. experiences, treatments, research,etc.)

I'm thinking something like this:
http://www.celiac.com/

Anyway, will PM some people on here to see if it's a possibility.